praying, fighting, crying together for Ella Joy

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Monthly Archives: August 2014

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Thank you for your unceasing prayers! We were so thankful Ella Joy was able to make it to her first day of school! Praise the Lord! We got the results of her CBC this morning, and unfortunately, her counts are still too low to receive chemotherapy. This will be one month without chemotherapy treatment. We are praying that her counts will miraculously rise so she will be able to start up chemo again for the following week. Please pray that God would protect her body against any illnesses or germs especially as she is attending full day kindergarten. There are already several children in her class coughing and spreading germs in the classroom. We stationed a little caddy station at her desk that includes a big bottle of hand sanitizer. We are praying she will use it frequently as even catching the common cold can mean a visit to the ER with fevers. Please pray with us that God would guard her body and that her ANC would rise up to safe levels so she can start her much needed chemotherapy treatments! Thank you so much for partnering with us in prayer!

8-19-14

Late last night we rushed Ella Joy to the emergency room because she had a fever. As we were packing we knew this meant at least 48 hours at Luries on antibiotics with her low ANC. Even though we knew she would be devastated that she would be missing school, there were so many things to be thankful for. First of all, I am so thankful I did not give her Tylenol (an option my APN suggested) for when her legs were hurting earlier that morning because it might have masked her fever. Also that night, on such last minute it is almost impossible to get a room at RMH, and God provided the very last one for the night! When Mike took Ella Joy to the ER, her fever never peaked! This is such a blessing because if it did, we would have to stay a lot longer at Luries. I am so incredibly blessed with a phenomenal hubbie who drops everything at night to drive us to Luries. He stays with Ella Joy the entire night in the ER with almost no sleep! Then, he goes to work exhausted but gets the job done like a BOSS! We scored a rock star nurse and an amazing fellow who I kept pleading with, like how in Genesis 18:16-33 Abraham pleads for Sodom. “Excuse me Doc, but if Ella Joy feels well and doesn’t have a fever, may we please go home today?” He agreed for a late night discharge. Hours later, “Sorry to bother you again Doc, but can we be discharged early?” He agreed at 7pm. Some more time passes, “Doc, please don’t get mad at my asking, but can we go home just a little earlier?” He agrees again 6pm! We are ready to go and I am signing the discharge papers, when her temperature is declared borderline! Oh Mylanta, we might have to stay another night! We have to wait to take another temperature, and thank God, she was cleared to go home!

Last night, we rushed to the ER expecting Ella Joy would miss her first day of school, but thanks to an amazing God who heard all your cries and prayers for Ella Joy, all things worked out! Please pray that whatever caused her to have a fever would not be anything serious. Ella Joy will be off chemotherapy for a third week in a row now. Please pray God would protect her body and guard her against any germs or illnesses. Please pray all t-cell lymphoblast cancer cells are destroyed so they would not multiply aggressively in her body. Please pray with us that Ella Joy’s ANC blood counts would rise and that there would be no more fevers! Even tonight as she sleeps, I am praying she would get good rest and feel well and fever free so she can go to school tomorrow! It is quite remarkable and amazing how God allowed all these things to happen. It was a tough night and inpatient stay at Luries, but we are so thankful for His provisions and markers of His faithfulness all around us, even in the slightest details.

Maya Angelou once said, “I can be changed by what happens to me. But I refuse to be reduced by it.” Going through chemotherapy treatment and fighting cancer has changed Ella Joy and our lives in so many ways … physically, mentally, socially, and spiritually. However, through it all, we pray we would not be reduced by the circumstances. Proverbs 27:17 says, “As iron sharpens iron, so one person sharpens another.” As we continue this journey, we pray that God would refine us daily and He would use others around us to sharpen us as well. Ella Joy will be getting another CBC next Wednesday. Thank you for the storehouses of prayers!

I would like to end this post with a picture I took of Ella Joy and Asaph at Luries this inpatient stay. With a last minute trip to the ER, help with Asaph is difficult to find with such short notice, so we gotta use the environment and resources we have. Just so thankful it is not flu season, or we couldn’t do this for nap time …

Ella Joy has a fever and we are rushing her downtown tonight to take her to Luries. They will be taking her CBC as well as blood cultures. It was already a challenging day for her with leg pains and now fever. Please pray for her that her fever would go down and that it would not be anything serious. I know she is so excited to go to school and her first day is Wed. morning. Please pray with us that she would be well enough to make it to her 1st day of kindergarten! Her ANC has decreased these last couple of weeks to 100 and possibly lower. If her ANC is not high enough at least over 1000, she will have to stay in the hospital for at least 48 hours and she will for sure miss her first day of school. Please help us pray for this miracle! He is able to raise her ANC to 1000 and above! We need and covet your prayers!

Update:

Please continue to keep Ella Joy in your prayers. In addition to having even lower ANC blood counts for 2 weeks now, she also has been struggling with her leg control. This has happened several times before when she was getting chemotherapy, but she has been off for a couple of weeks and this morning, Asaph ran to my room telling me that Ella Joy couldn’t walk. I told him she would be fine but he came to me again and said her legs hurt. I went to her, and sure enough, she was in the same spot, unable to walk or move her legs. I have asked the doctors and nurses about this and they do not know for sure what is causing this. Please pray that her counts would rise and that she would be able to walk to school today so we can bring school supplies! We cannot thank you enough for your faithful prayers!

8-7-14

Thank you so much for your faithful prayers for Ella Joy! We are so thankful to God for such amazing prayer warriors fighting with us! A huge thank you to Marissa and Hannah who came to help out with Ella Joy and Asaph. Also thank you to Mr. Schrieber for giving us a ride this week! Today, Ella Joy got her spinal tap as well as vincristine chemotherapy. She had to lay her head on my lap because she felt very nauseous following her spinal tap. After we got her blood counts back, we found out that she has extremely low white blood cells, platelets, and absolute neutrophils. Temporarily, we have to stop giving her 6mp and the 6 methotrexate pills until her ANC rises up to safe levels. However, we will continue giving Ella Joy bactrim and prednisone. It was tough for Ella Joy, because after she got poked for accessing her port for her chemo, she was de-accessed and then she had to be poked and accessed again for blood cultures to make sure she is correctly metabolizing 6mp pills. Praying that everything will be okay when we get the results back. She has been complaining about her legs hurting at times as well as her stomach hurting, and her appetite has significantly decreased. Please pray that during this time when she needs to have drugs withheld that she would be strong and God would protect her little body.

This summer felt like it flew by so quickly! There were definitely many amazing high points, but a few challenging ones. Ella Joy loves going to VBS, but one of the hardest things was hearing a little boy making fun of her every single day. Pointing directly at her and yelling to her face, “That’s supposed to be a girl?” Then he continued to say things like, “I don’t like your skirt,” “I don’t like your boots,” “I don’t like you.” “Get away from me,” “You look like a boy!” With tears in her eyes she tried to explain that she couldn’t help it, it was the cancer and chemo that had caused her hair to fall out. Yet every single day of VBS, he kept saying mean comments to her that made her cry and feel sad and insecure. Please pray that God would continue to guard her heart. One of the highlights of this summer was a very special family retreat for children with cancer we went to called LFR or Lighthouse Family Retreat. It was so amazing getting to meet other families sharing about the journeys we have been through as families fighting against cancer. We also had phenomenal family partners who lovingly watched our children and served us in so many sacrificial ways! We left the retreat feeling refreshed and so incredibly thankful!

Ella Joy needs to get blood counts at home on Thursday 8/14. Please pray her ANC will rise so she will be able to continue her medications. The next time we will be at Luries for her chemotherapy and clinic visit is on September 4th Thursday. Please pray that Ella Joy would be ready for another round of chemotherapy.

“A bruised heart that chooses to beat with a passion for God amid pulsing pain and confusion may just be the most expensive offering placed on the divine altar.” – Beth Moore

Even though the one little boy was constantly making fun of Ella Joy every day of VBS, she still wanted to continue to go each morning to learn about Jesus and sing praises to Him. My prayer for Ella Joy is that even when her heart is bruised with hurtful words, it would continue to beat with a passion for God. May she put herself in the offering plate and give herself to God as she grows to be a Proverbs 31 woman.

“Through him then let us continually offer up a sacrifice of praise to God, that is, the fruit of lips that acknowledge his name.” – Hebrews 13:15